by Janine Walsh
Cofounder of 

ecca was born out of sheer frustration.

There are personal and professional reasons for this frustration.

On a personal level, I myself had endured the indignity of repeated laparoscopies for pelvic pain, only to be told the pain was in my head, not my pelvis. Various other inferences were made about the state of my marriage (a stressful relationship must have been causing my pain) and my slight build (obviously I was anorexic!). When finally diagnosed at age 28 I felt a huge sense of relief and thought then about moving on with my life and career. The support I received during this time, while helpful, didn’t assist me to ‘live well with the disease’. As endometriosis is a chronic disease, I was led to believe that recurring pain and repeated laparoscopies would be a way of life. Women I saw living with endometriosis tended to dwell on it and let it consume their lives. As a result of this negativity the seeds of ecca were sown.

Six years later I found myself co–ordinating the Women’s Health Service at Cliveden Hill Hospital. As the hospital specialised in gynaecological laparoscopic surgery, the larger part of my work involved educating and counselling women with endometriosis. What I saw I didn’t like. Women were undergoing repetitive surgical treatment, often on a yearly basis. Women I spoke to on our information line, reported ineffective surgical treatment and inappropriate medical treatment. They complained of recurring symptoms soon after surgery or drug treatment. Throughout these treatments they received little ongoing management or care and guided support. What assistance was available, seemed to emphasise the negatives. The women shared their experiences of the disease which often frightened the newly diagnosed.